Goodbye — For Now

My very first Say Hola Lola post (actually it was called Live Love Travel Souls back then) was over six years ago. Never did I imagine this little ole’ blog would mean so much to me. It became a place to inspire, divulge, vent, relive, accept and document what has been the most rewarding yet one of the most challenging times in my life. I shared pieces of my life that probably belonged in a diary — not out in public, but I wanted to be real. I wanted parents of children with special needs to know they were not alone. But more importantly, I wanted to show that life does go on. And that life, while different than what you had expected, is full of love, happiness,...
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Why Lola Won’t Be Going to School This Year

Today is the first day of school for kids going to the Indiana School for the Blind and Visually Impaired (ISBVI). Lola would normally be waking up at 5:45 a.m. I’d be trying to get her to eat a little something before her long ride to ISBVI. She’d wait patiently outside, knowing the bus would be coming to pick her up soon. She’d ride with her friends and listen contently as her bus driver, Terri, and bus monitor, Toshua, sang to her. She’d be greeted at ISBVI by familiar faces and welcoming voices. She’d know she was back to her pre-summer routine. But today Lola is sleeping in. We will still rush around because nothing is more chaotic than corralling two young kids in the morning. We will...
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Grateful For This New Normal

“Since these episodes aren’t seizures, that means Lola hasn’t had a clinical seizure since she was a baby,” I said to my husband last night. He agreed and we both sat silent for a minute. Just let that sink in. No clinical seizures in more than five years. How incredibly lucky we are to be able to say those very words. We say clinical meaning seizures that are actually visible. A past EEG showed her to be having subclinical seizures as she was sleeping, but the last two EEGs did not detect those subclinicals. What is most fascinating is that we have no idea what a clinical seizure would even look like, if Lola were to have one. The type of seizures she had as a baby were...
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Well, That’s Surprising News

It’ll be two years in August since Lola showed her first sign of a clinical seizure — at least we thought it was a seizure. We had just left the dentist’s office and Lola was still recovering from the trauma of the appointment. I noticed her exhibiting some very strange behavior through my rear-view mirror. She hadn’t had a seizure in a couple of years, but like any parent of a child with epilepsy, I was always prepared for when that seizure-free streak could end. I pulled over and immediately began to videotape the episode which you will see below. I sent it on to Lola’s neurologist and while she wasn’t fully convinced it was a seizure, rather than having Lola endure yet another EEG, we put her...
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Halloween Can Be ‘Tricky’

What a bizarre holiday you are, Halloween. 364 days a year we teach our children not to talk to strangers, not to go up to stranger’s homes and never to take candy from a stranger. Yet on this one day a year, all rules are obsolete. Instead we say, “Hey kids! Go ahead and talk to strangers. Go right up to their homes. And why yes, by all means, eat their candy!” For young children and especially children with special needs — it can be quite confusing. Last year the weather was dreadful in Indianapolis. It was sleeting, it was cold and there was no way I was going to make my then 3-year-old and 10 month old endure Trick-or-Treating. This year I really wanted both Lola and...
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